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Over 1200 families are caring for a loved one with the rare disease ”SynGAP” resulting from a variant of the SYNGAP1 gene. This 10 minute weekly podcast is for them. A quick summary of the latest news in the space. The host is Mike Graglia, co-founder & managing director of the SynGAP Research Fund. SRF is a parent-led, all volunteer public charity in the US that strives to accelerate research into treatments for SYNGAP1 so that we can help our loved ones in a timeframe that matters. Learn more at https://www.syngapresearchfund.org/
Episodes
Tuesday Apr 15, 2025
Tuesday Apr 15, 2025
Tuesday, April 15, 2025 – Week 16
CURRENT NEWS
#Sprint4Syngap 2025 is in eleven days! Start or join a team and fundraise!
https://curesyngap1.org/sprint25 look at these faces, $167,979 of which $145k+ fromTavillas!
Board Announcement: https://www.eurekalert.org/news-releases/1080490
LEARNING ABOUT SYNGAP1
ProMMiS NHS Webinar from Dr. McKee: https://youtu.be/zozwf1NDB5I we were waiting for this great paper: https://www.sciencedirect.com/science/article/abs/pii/S1098360025000668 which I discussed in #S10e167.
Also, learn from Dr. Knowles, Apple Pod: https://podcasts.apple.com/us/podcast/stanford-medcast/id1529672674
YT https://youtu.be/VBWa0FklYJs
- Catatonia, watch these when you can: https://www.linkedin.com/posts/activity-7316937356194844672-PoUi/
- Please ask me your ASO Questions - https://www.youtube.com/watch?v=1I0sRVZTY-A For instance, these won't repair, but they will will upregulate... = make work harder.
MORE NEWS
In #S10e168 I talked about Drs Bowie & Willsey, this week I can applaud Postilla!
SIBLINGS
Tell your story, please for the other ones.
https://curesyngap1.org/syngap-siblings/shanaye-worth/
https://curesyngap1.org/sibling-support/
PUBLICATION COUNT
PubMed is at 17 YTD, 325 in total (trending to 52+, but I’m not as confident)
SHARE BLOOD TO THE SRF BIOBANK AT CB!
Read here for more information: https://curesyngap1.org/blog/fueling-research-syngap1-combinedbrain-biorepository-roadshow/
VOLUNTEER
Join us: https://curesyngap1.org/volunteer-with-srf/
SOCIAL MATTERS
- 4,009 LinkedIn. https://www.linkedin.com/company/curesyngap1/
- 1,334 YouTube. https://www.youtube.com/@CureSYNGAP1
- 11,369 Twitter https://twitter.com/cureSYNGAP1
- 46k Insta https://www.instagram.com/curesyngap1/
NEWLY DIAGNOSED?
New families have resources here! https://syngap.fund/Resources
Podcasts, give all of these a five star review!
https://cureSYNGAP1.org/SRFApple
https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917
Episode 169 of #Syngap10
#Advocate #PatientAdvocacy #UnmetNeed #SYNGAP1 #SynGAP #SynGAProMMiS
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